New Scans – Episode 1

Surgery is tentatively scheduled for 2 weeks from tomorrow. The surgeon needs new diagnostic scans to make sure that the surgical plan we discussed back in November is still valid – meaning there is no new cancer and checking on the size(s) of the tumor(s). They wait until chemo is finished or nearly so before scheduling these new scans.

This morning, I had a new mammogram, ultrasound and MRI. I was hoping this was going to be easy. Of course it couldn’t be. Interestingly enough, the mammogram was for just the side with the mass. I’d have thought if we were looking for new cancer, we’d look in both breasts. Nope.

After the technician got me all situated in the machine, she told me to hold my breath. It was a funny moment. Right then I realized I’d been holding my breath for 5 months already. I will probably hold it for at least 2 or 3 more before I make any attempts to exhale. I am surprised that I haven’t turned blue yet.

She does the handful of scans we need. I asked to see them. I am not happy with what’s on the screen. Between the oncologist and my own hand, it felt like the tumor was gone. What I see is still a big blob in the middle of my breast. It’s not lit up as brightly as before and it’s not quite as big, but it’s definitely still big and still there. What the hell?

I went back to the waiting room to wait for the ultrasound. I’m sitting there thinking about what I saw. How can it still be that big? The mammo tech comes out and asks me back in. We have to do another set of views. Turns out they saw another new set of calcifications. Great. They look like skin calcifications, but we have to prove that’s what they are. Right. I get it. Bzzt. Scan done. Back to the waiting room I go.

Now I’m thinking about what happens if there is new cancer. Even if it’s just new calcifications that aren’t even a tumor yet, what happens next? Were the last 5 months a waste of time? Where does my bucket list start? I wonder how fast this will grow. I will absolutely not do any more chemo to “stop” this new thing. There isn’t really a space that exists in actively being on chemo and living out your bucket list. Not with the stuff I’ve been on anyway. It sinks in that if this is new, this damned cancer really is intent on killing me.

And she calls me back again. Now we need to make sure I have no deodorant or anything on my skin. I am hoping that they have something to do with the moles and skin tags I have on my chest. I have to wash myself again and we do another set of tangential views. I ask her if I can look again. I’d like to see the before and after. She has both the previous and the current scans on the screen. She tells me that she’s not a radiologist. I know this. I just want to understand better what I saw before. She points out that it is a little smaller than before. Maybe by half. And it is a lot less dense. Okay. So maybe the shell is there but sort of empty like the oncologist said sometimes happens. Why does it feel like it’s gone when it’s clearly still there?

Finally, the ultrasound tech calls me in. Thank God we don’t have to do more mammograms. Now I just want to get out of there. She measures the breast mass and one lymph node in my armpit. She seems to be having a hard time finding the others. I’m not sure. She isn’t really saying anything. When I had the original scan, the 3 lymph nodes seemed pretty obvious to the tech and radiologist in Denver. This tech seems to be digging for them. When she’s finished, the radiologist comes and and tells me that they are definitely skin calcifications. Completely benign. Nothing to worry about. Good!

Next, it’s across the street to the MRI. 20 minutes of thinking about how I could write a percussion composition using the rhythm of the MRI with the sorta jazzy music from Pandora in my headphones in the background and I’m done. There isn’t much the tech can show me. She has other patients’ records on the screen and another patient waiting, so I have to go. I did find out that I can request the imagery – they didn’t just give it to me before. So now that’s done. This will satisfy my inner need to see it for myself. I know I am no radiologist or surgeon. I was a declared pre-med major and I do still own a copy of Grey’s Anatomy, so there.

Now to wait til Friday to see what the experts have to say.

 

 

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Wearing My Heart on My Sleeve

I’m not usually an emotionally demonstrative person. Well, maybe not publicly.

One of the effects of having my life turned upside down with a cancer diagnosis is discovering that many of my feelings are hanging around right at the surface. The littlest things bring tears. Happy tears, sad tears, in between tears. Doesn’t matter.

I’m still not used to this.

I get a case of the feels watching TV commercials. Comedies. Dramas. Documentaries. The news.

Seriously? Commercials?

This isn’t a bad thing. Really, it’s not. It’s just because I’m not used to it, it still feels, well… a little weird. I guess I thought that because I’ve accepted everything else about this fate that I’d feel less sensitive. At near the 6 month mark, it’s not going away.

What’s been harder, at least for me, is being present enough to check myself when I’m dealing with rude salespeople, telemarketers, or people at work. I have been having a hard time catching my tone before it escapes my mouth. Or my email. Or… okay, Twitter.  Angry tweeting feels a little like therapy, and I have had the presence of mind 99% of the time to not behave like a complete asshole. I’ve still managed a couple of epic burns, though, and that’s not really who I want to be. Or more accurately, that’s not how I want to be known.

I had long ago made up my mind to take an extended leave from work to recover from surgery. One of the things I recently started looking forward to in that time away was the ability to worry only about cancer for those 8 or so weeks and not have to worry about feeling non-productive at work on top of it. My hope is that I will be able to have a little bit of emotional reset at the same time. Time to just breathe. I realized just today that I have really been pretty much holding my breath since October. I need to exhale.

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11 Down, 1 To Go

After today, I have one chemo treatment with Taxol left.

One.

I am so ready to be done with chemo. So ready.

The birds woke me up about 5 am and I was at the hospital by 7:30 am. I started my appointment shortly after 8 am, finished my infusion and left the hospital at 12:30 pm this afternoon. It’s 4:30 pm right now and I’m struggling to keep my eyes open. Last week, I closed them for a short nap and woke up at 9 pm, 5 hours later. So much for dinner. Good thing I wasn’t particularly hungry.

This is my life now.

I need a nap five minutes after I get out of bed. I spend most of my day fighting off the urge to take a nap. When I finally give in, I sleep for hours. On AC chemo, I could take an hour nap and feel okay. Taxol doesn’t work that way.

So much irony. I was the child who never needed a nap. I drove my mother crazy. I became the adult who averaged 14-18 hour days every day. I *was* the Energizer Bunny.

My body’s tired. My brain is tired. All of me is just plain tired.

I need to find out if I will get any part of my short term memory and cognitive function back. I need to find out how much neuropathy is going to be permanent. How much feeling I will get back in my feet and if the pain will ever go away I want some of my energy level back. I am eager to get past this big mountain of surgery and radiation.

I am eager to be done.

Eager to get back to my life. A little different life than before, but still MY life. Not cancer’s life. Not chemo’s life. Not radiation’s life.

MY life.

 

Posted in Chemo, Treatment | Tagged , , , , , , , , , , , , , , , ,

Seymour Butts

Okay… I said I wasn’t going to post anything immodest or any truly disgusting descriptions. This post sticks to that, but it talks about something kinda gross, so if you go forward, be WARNED.

Something gross this way comes!

Y’all know what butt cheese is, right? I hope? If you don’t, Google it and save me the embarrassment of explaining it to you.

Maybe I should have started with y’know that smell when somebody says something smells like ass?  Hmm. Yeah, probably shoulda started there.

Anyway… now that you’ve imagined all these things I didn’t really want to describe in detail. 😀

For the record, it’s not your butt that makes your butt smell, well… like a butt. Chemo taught me this. Truly. I have places on my body where my skin touches other skin all day. Sorta like armpits. Okay, not armpits. Try again. Same vicinity of my body.

Maybe this’ll help.

So when the oils and bacteria are all out of balance and your skin sweats and it’s touching other skin, it reacts. What you get is a red, irritated, chafed area that as I discovered… smells a lot like a butt.

Why? Well, I’ll tell ya. Taxol has gifted me with a whole new knowledge about my skin. From the breakouts to the rashes to the peeling to all the other things that happen when your skin’s no longer “healthy.”  One of those things has to do with the amount of oil on the skin and the bacteria that live there. For what it’s worth, there are always bacteria on your skin. Good bacteria and not so good. This not so good bacteria is part of what causes you to have acne breakouts, so it’s not like some really evil thing that has to be abolished completely. It’s the balance of those things that makes our skin healthy. Because chemotherapy disrupts skin and hair growth, the amount of good bacteria hanging around goes down and then there’s an imbalance, and that’s what usually causes issues.

So my red, burning, smelly skin is caused by not having enough “good” bacteria on my skin because chemo’s eaten all the oil that they need to thrive. So now you know why your butt doesn’t really smell like butt, but it’s what we imagined butt would smell like.

Cool, huh? No, not so much?

Sorry to disappoint.

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Honesty is Still the Best Policy

This is kind of a rant, and yes, I’m angry, and to be honest, I think you would be, too, all things considered.

I’m finding myself really wishing that all of my doctors would have just been up front and honest from the beginning. No outright lies. No half-truths. No hedging. No hiding behind “we won’t know until x time or x procedure or x test is done…”

I’m done with unclear communications or complete and outright failures to communicate. There’s no reason a surgeon can’t tell you the typical restrictions for a surgery they perform hundreds of times a month. I’m tired of “if we told you the truth, nobody would do this.” You’re damned right most people wouldn’t do this. Not if they knew the truth. And certain not in this time when we are starting to recognize that the quality of life is more important than the quantity of days we have left. If my choice is to spend my life savings on chemo, surgery and radiation while losing my ability to think straight, walk, and lift more than 5 lbs for the rest of my life, or go travel and see and do all the things that I’ve wanted to do *and* take my family with me, the choice to live and die with cancer without the side effects and years of looking over my shoulder waiting for it to come back would have been a whole lot easier.

But those aren’t the choices laid out to you. Nobody tells you that chemo will rob you of your ability to think, multitask and remember simple things. Nobody tells you that surgery to remove cancerous lymph nodes and the following radiation will leave you so literally scarred that you won’t be able to move your arm right ever again. Nobody tells you that your immune system will be forever compromised and you’ll be susceptible to every little bug that comes along. Nobody tells you that your body and your life and everything about it will never be the same again.

What they tell you is you’ll have 5 months of chemo and then we’ll put you on another drug that we still don’t know what benefit there will be to having you on it for the time we have planned. Faced with surgery that will transform all that makes you outwardly a woman, you won’t get to choose how you will look when they’re done. And radiation, well, we’ll tell you that it’s a month of treatments, but won’t let you know that those treatments will be every day in their facility, and oh, by the way, they’ll go on for at least 6 weeks or longer. Oh, and the only parking we’ll cover is for chemo treatments. Why only chemo? Who knows. Surely with the money you saved in parking for chemo treatments, you can afford to pay to park for 3 months for all the daily appointments we now require.

Oh, and by the way, you start these treatments next week. There’s no time to digest all of this information and make the choices that are best for you. We can’t wait any longer. They don’t care that some people’s lives are immeasurably and forever changed, and not for the better, by these treatments. Because the cancer you have is really aggressive and we’re going to treat it very aggressively. And your life, as you know it, will no longer exist. You see, you’re going to have to give up your career. Oh, and you won’t be able to swim for exercise anymore. Well, you won’t have the stamina to ride a bike more than 5 blocks, either, but please do find a way to exercise without moving your arms while we fill your body with poison that will make you feel tired and weak all the time.

They know these things. They know chemo brain is a real thing. They know it lasts for years and years but will tell you it’s temporary. Same with neuropathy, weakness, immunity and fatigue. The worst part, I think, is that when they do acknowledge that there are long-term issues, they aren’t interested in treating them. As another survivor put it, “We’ve faced the big guns of cancer treatment, but now we’re back home the long term injuries that destroy our quality of life are treated with Band-Aids”.

There are days that I wish I’d have followed through with medical school so I could be on the other end of this conversation. Really, Doc, how much would you be willing to give up to have one or two or 5 more years? None of this? Yeah, that’s what I thought.

 

 

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Maya Said it Best

Happy 90th Birthday, Maya Angelou! I started this blog with the intent to show that even with a diagnosis of cancer and yet to be known outcomes, I can still survive, thrive and do so with style. MayaAngelou

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Almost Halfway There

I started this journey September of last year. Well, the week after Thanksgiving counting from the first chemo treatment, which is where I have to start for the purpose of this conversation because the reality is that this journey will last the rest of my life, and not just until I’m finished with chemo. I’m not about to try to put a date on that, so I’ll settle for being done with chemo, surgery and radiation.

As of last Friday, March 30th, and I’ve got only 2 chemo Taxol treatment left. I will start the maintenance doses of Herceptin on April 27th. Herceptin is the biologic drug that specifically targets metastatic HER2+ breast cancer. It’s got some of the same side effects as Taxol. It’s still technically a chemo drug, but it doesn’t work randomly like most other chemo drugs do. I’d been getting it every 3rd week with Taxol and Perjeta, so starting the 27th, I’ll be getting it by itself. The most annoying side effect of Taxol is the peripheral neuropathy. While I had it under control for a while, it broke through about week 6 of my infusions. I go between having numb spots to having burning or stabbing pains in my arms, legs, hands and feet. Sometimes it’s even like a pinching sensation. I know it’s going to take a while for my nerve endings to heal, but I’ll be happy when this goes away again. I’ve learned not to get my hopes up too much in regard to side effects, so I’ll wait until I have had my 1st infusion of it by itself to make any proclamations.

The next bit of good news is that my tumor has shrunk significantly from when I started chemo. The oncologist and I both felt my tumor, and it was down to somewhere between a raspberry and a grape. This week, I can’t find it! I was told, at the beginning, that they had seen previous tumors completely disappear by the time the surgeon was ready to operate.

Also on the great news list is that I have appointments set for the scans and the surgery. By the time I start radiation, I will be at the halfway point of this part the journey. The time between appointments doesn’t feel like it’s moved all that quickly, but the past 5 months have kind of flown by. I’m hoping the next 7 months go just as quickly.

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